15

Apr 2018

To Disclose Autism or Not

Honestly, only one or two people knew about my son’s autism for the first, well, two years.

Yep, that’s right. We kept it to ourselves.

And, then we disclosed only to family.

Then, years later, we disclosed…well, we disclosed when and if we felt like it, I guess.

Why did we wait so long to tell (most) everyone?

First, we were scared and didn’t know what was happening.

Second, we decided to focus only our son.

Third, we didn’t know what we were doing and therefore didn’t know how to explain autism to anyone else. We had to learn about it in order to be able to explain it.

We felt this way because of the first reason, we wanted to focus on him and not have people in our lives saying, “He’s just a baby, he can’t have that,” or “Boys talk late,” or “First time parents panic too much.”

When did we feel comfortable disclosing?

With a high functioning child who “looks” neurotypical, I have been taking my son out into the world his whole life and, for the most part, he had been greeted pleasantly with “Gerber Baby” and “Isn’t he cute” and “What a quiet boy.”

I never kept a record, but most of the time I said nothing about my son’s diagnosis, especially early on when I had no confidence in what I was saying.

Often I would say nothing because there was no reason to say anything to this or that stranger. The interaction was quick or non-consequential. Why would I explain my son’s autism to the checker at the grocery store?

Then, I think things began to change for me.

When and how did they change?

I began to attend autism conferences and volunteer for autism organizations. I began to talk about my son with other autism parents.

That was easy. Talking to other parents, and listening to their stories. It was a comforting back and forth.

I gained confidence.

And, that moved me into feeling okay with disclosure. When it was needed.

What are my reasons for disclosing today?

I never go out into the world saying, “I have to disclose my son’s autism.”

Yet, sometimes it happens. Sometimes I’ll be chatting with a fellow parent and someone else in my life and it comes out.

Other times, as happened for years, I disclosed just to explain away behaviors. I’m not saying this is right or wrong, but there were times (and probably will be more times) when disclosure is simply just a short-hand that makes things easier somehow.

Yes, easier for me to deal with other people. Easier to explain him and his behavior to others.

I don’t want anyone thinking my child is just being a brat, for example.

Additionally, when it comes to my child’s education, I am a believer in the IEP process. My son now attends his own IEP, which I believe is proper. But, I’ve never had a problem disclosing my son’s diagnosis to his educators.

However, my worry is that by my disclosing my son’s autism, I’m labelling my own child. He does not wear a sign around his neck saying that he has autism, so I decide to put that sign on him?

Being a teenager and now in high school, I have discussed this topic with him. He’s not uncomfortable with disclosure, yet he doesn’t go out of his way to disclose his own autism.

Which way will I go?

One thing I’ll try to do is respect my son’s wishes, respect his choice of disclosure.

Then, I’ll probably disclose if I feel it’s necessary.

Finally, there will be other times, I’ll pull back because my private business is my private business.

That way I won’t be labelling my own child.

He’ll be who he is and what he appears to be in front of the general public, and I’ll just let it be.

If they’re going to judge, let them. Stop trying to fix the opinions of others to try to make myself feel better or even to make it “easier” on my son. That’s not really teaching him how to go out into the world by himself, which being only three years away from eighteen, he’ll be an adult very soon.

Analyzing disclosure, for me, is a step in a process that is obviously circuitous. A good day, a bad day, just an ordinary day can lead to… anything, really. Disclose. Not disclose.